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Summary of the impact

We addressed a serious mismatch between increasing rates of autism
diagnosis across Europe and the shortage of professionals skilled in
effective treatment provided by Applied Behaviour Analysis (ABA; www.bacb.com).
A parent-lead charity (PEAT) was established in N. Ireland (www.peatni.org);
teams from 7 European countries adapted our multimedia training resources
(www.stamppp.com); Masters and
Certificate level courses were established. Government documents informing
policy in Scotland and New Zealand were corrected. Schools and charities
in the Republic of Ireland, Poland, and Portugal, and other Masters level
courses subsequently appeared in Ireland (http://tinyurl.com/cxpo66m).
Simple Steps NI Ltd. was established involving PEAT and Manleys (http://www.manleys.co.uk).

Underpinning research

The number of people diagnosed with Autism Spectrum Disorder has risen
dramatically over the past decade. Whether this is caused by diagnoses
becoming more precise, over-diagnosing, or an actual rise in incidents is
a much-debated issue. In any case, recent studies have estimated that if
not adequately treated the lifetime cost of care for an individual with an
ASD can amount to as much as $3.2 million. Therefore the issue of what
constitutes the most appropriate response to diagnosis is very important
(1, 3, 6). Getting it right can save enormously, not only fiscally (2) but
even more importantly, it has major impact both socially and emotionally,
i.e., in terms of quality of life for individuals, families, and society
as a whole (4, 5).

A comprehensive study of parental needs, showed that parental and
professional views do not always concur; that families make extraordinary
sacrifices; that siblings are affected; and that parents are under
tremendous stress (4, 5). Parents argued that educational and social
service supports are not efficient and that they are forced to rely
largely on support from within the family or from friends. In particular,
some important differences between parental and professional perceptions
became apparent in relation to interventions. The importance of early and
timely diagnosis and appropriate and socially valid educational plans was
established (5). This research confirmed that having a child diagnosed
with Autism Spectrum Disorder (ASD) poses challenges for families, many of
which can be addressed through appropriate intervention and education.
Results showed that parents whose children attend ABA-based schools are
generally satisfied with their child's educational provision, monitoring
procedures, and level of staff training, while parents who are not offered
ABA-based schools rely on ABA-based home programmes (4).

More recently, finding ways to facilitate knowledge transfer for parents
who need help to deal with autism has been a major focus of Prof Keenan
and this is evidenced by multiple translations of books into European
(German) and Asian (Japanese, Hindi in preparation) languages. Over the
past seventeen years he has also pioneered the use of multimedia in the
teaching of Behaviour Analysis (6). His insights have led to the
multimedia parent training pack SIMPLE STEPS which has been translated
into German, Spanish and Norwegian, and presently is being translated into
Portuguese, Italian, Icelandic, Dutch, and Swedish.

References to the research

Conceptual
Keenan, M. & Dillenburger, K., (2011). If all you have is a hammer
...RCTs and hegemony in science. Research in Autism Spectrum Disorders,
5, 1-13. doi:10.1016/j.rasd.2010.02.003

Family needs
Dillenburger, K., Keenan, M., Doherty, A., Byrne, J., & Gallagher, S.
(2011). ABA-based programmes for children diagnosed with Autism Spectrum
Disorder: Parental and professional experiences at school and at home. Child
and Family Behavior Therapy, 34, 1-19.

Details of the impact

N. IRELAND
The first parent-led Autism Charity in Ireland PEAT (www.peatni.org)
was established by Prof Keenan in 1997. Over £11/2 Million raised;
produced the first book in Europe on ABA (translated into Japanese
and German, and Hindi); developed the first multimedia
training program on ABA and autism (www.simplestepsautism.com)
(sample package attached) (Appendix 1). See presentation by
Chairperson of PEAT — http://www.mediator.qub.ac.uk/ms/Quart/TByrne.m4v

Masters Training
The first Masters course in Behaviour Analysis in Ireland established in
Oct. 2006 at UU. Eighty four graduates, twenty of whom have gone on to
BCBA's practising in Ireland, United Arab Emirates and India.
International standards of training in ABA (www.bacb.com)
now included in job descriptions in HSC Trusts (Appendix 4).

REPUBLIC OF IRELAND
Over 13 schools inspired by workshops from Prof Keenan and his students.
"Saplings was one of the first schools.. In financial terms our turnover
for 2008 was €4.7 million with the Department of Education & Science
funding approximately 85% of our turnover working out at €4 million."
(Marc de Salvo, Director) (Appendix 5)

POLAND
The Lower Silesian Association of Behavioural Therapy for People with
Autism (Active Mind) established in 2013 after workshops by Prof Keenan.
"Dr Keenan's workshops have been of crucial importance for promoting the
scientific and effective therapy for people with autism..." (Professor
Małgorzata Sekułowicz) (Appendix 7)

STAMPPP cited as an example of excellence by the
European Commission at their 15th Anniversary meeting in Brussels (9th
Nov., 2010). It also was selected as a case study by the European
Inclusion Initiative (http://www.llpinclusion.eu/default.asp).

GERMANY
Simple Steps is used as an important didactic tool in the only academic
education program for evidence-based interventions in ASD in Germany.
"Simple Steps has proved its immediate usefulness in therapy as well.
(Prof Dr med. Hanns Rüdiger Röttgers) (Appendix 9)
Presentations by partners of STAMPPPP II describe impact in their own
countries. (http://www.stamppp.com/events.html).

New Zealand
Prof Keenan was on a lecture tour of New Zealand in 2003.
"The impact of this on the local ASD community is very measurable. There
are now a number of BCBA Early Intervention providers based in New Zealand
— this has reduced the reliance on overseas professionals at considerable
costs to families. " (Mary Henderson, ASD Kids Trust Trustee and
co-Founder)

Along with other professionals, Prof Keenan persuaded the New Zealand
Department of Education to revise their report on autism therapies because
of the inaccuracies it contained on ABA (Dec, 2006). (Appendix 10)

Awards
Prof Keenan has received a number of awards: the Making a Difference award
from the BBC (2002); Award for Promoting Equality of Opportunity, BPS
(2002); Distinguished Community Fellowship, University of Ulster (2002/3);
Personal Achievement Award, New York State Association for Behavior
Analysis (2005); Fellow of the BPS (2006); Award for Public Service in
Behavior Analysis from the Society for Advancement in Behavior Analysis
(2008).